APPLIED SCIENCE & ENGINEERING LABORATORIES
duPont Hospital for Children and the University of Delaware
Vol. 2, No. 3 -- Summer/Fall 1997
Participatory Action Research (PAR), an approach to including persons being studied in the design and conduct of the research, has become a widely debated issue in disability and rehabilitation research. In 1994, Dr. Katherine Seelman, Director of the National Institute on Disability and Rehabilitation Research (NIDRR), established a planning group to investigate the complex social, scientific and administrative issues PAR raises. A conference was held in April of 1995 entitled "Forging Collaborative Partnerships in the Study of Disability -- A NIDRR Conference on Participatory Action Research." Information presented at that conference form the basis of this report.
The debate about PAR in the disability field began in 1991 when Dr. William Graves, former director of NIDRR, noted both individuals with disabilities and rehabilitation service providers reported that NIDRR-funded research was not helping to solve problems -- it was too academic, it was impractical. He recommended PAR as a way to address problems with the relevance of disability research.
While federal support for direct services and income maintenance programs has increased in the last 20 years, support for rehabilitation research has decreased. It has become critical to maximize the benefit of research dollars and many believe PAR is one way to achieve this (Turnbull & Turnbull, 1991).
The ultimate goal of NIDRR-funded research is to improve the quality of life of people with disabilities; therefore, many feel research with direct application to real needs and problems is most appropriate. However, Corbet pointed out that for researchers and practitioners, consumer involvement in research "raises thorny questions about its effect on the quality of science and service delivery, the conditions of new funding, academic freedom, and their own roles in research. Consumer orientation clearly demands some rethinking of the status quo" (1995, p. 214).
While the swing toward consumer involvement in research may seem sudden, it is a logical extension of trends in the larger society and in the disability community. Corbet (1995) identified four national trends that provide a context for the movement toward PAR -- consumerism, self-help, civil rights and total quality management (TQM). America has been evolving as a consumer-driven society. The need to involve consumers is a well-understood foundation of sound business practice in the private sector. The self/mutual-help movement that began with Alcoholics Anonymous in the 1930s has proliferated into many aspects of life today. The increase in self-help programs suggests Americans feel they have expertise to bring to problem-solving. The civil rights movement highlighted the needs of disadvantaged groups. In the 1980s, American business embraced TQM, which relies on consumers to identify what does and does not work to enhance business's competitiveness. All of these trends support the critical role of consumers in an activity.
Trends in rehabilitation and the disability community have contributed to growing support for inclusion, empowerment and participation and away from exclusion and paternalism. The civil rights movement of African Americans and women fueled the disability rights and independent living movements in the 1970s. Political advocacy resulted in the enactment of important legislation. The Rehabilitation Act of 1973 brought wholesale changes to the field of rehabilitation. It placed an emphasis on serving persons with severe disabilities, it addressed the notion of equal access, and it addressed civil rights. In the 1978 Amendments, independent living was established as a legitimate goal of rehabilitation, which signaled the expanded view of the person-as-a-whole-person (IRI, 1992). In 1988, the Technology-Related Assistance for Individuals with Disabilities Act was passed. It was one of the first laws to mandate consumer-responsive services and inclusion. The Americans with Disabilities Act of 1990 is landmark civil rights legislation that guarantees equal access to employment, public facilities, transportation and telecommunications. It represents a major achievement of the disability rights movement. The Rehabilitation Act Amendments of 1992 mandates presumptive employability for vocational rehabilitation. Philosophically, the Amendments are evidence of the movement toward full inclusion of persons with more significant disabilities by presuming that they can benefit from services designed to help them achieve employment (IRI, 1992).
Consumer involvement in research has evolved in the context of the American consumer movement, social research methods in anthropology, and community development. Over the years, federal policy has promoted such involvement. For example, the 1962 Consumer Bill of Rights included the right to a fair hearing by the government in the formation of consumer policy; the Economic Opportunity Act of 1964 included provision for the establishment of community action programs involving the maximum feasible participation of the local residents; and the Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 emphasized participation of the populations served as both policymakers and employees (Fenton, Batavia & Roody, 1993).
The 1992 Amendments to the Rehabilitation Act offer statutory support for NIDRR to establish a policy promoting consumer involvement in research. "The amendments generally reflect a strong Congressional desire for the beneficiaries and constituencies of NIDRR research and training to participate meaningfully and cooperatively in the research development, dissemination and implementation process" (Fenton, Batavia & Roody, 1993, p. 3).
Consumer participation in research funded by NIDRR and its predecessors has taken place to some degree since the early 1970s (IRI, 1992). However, the issue has resurfaced in the 1990s, with discussion focused primarily around the PAR model. As stated earlier, in 1991 Dr. William Graves encouraged the use of the PAR approach to close the gap between research and practice. In 1992 the IRI held its 19th Institute on "Consumer Involvement in Rehabilitation Research and Practice" and the National Association of Rehabilitation Research and Training Centers (NARRTC) Research Committee reviewed approaches to involving individuals with disabilities in the programmatic activities of the Rehabilitation Research and Training Centers (RRTCs).
In 1993, NIDRR published a Proposed Policy Statement for NIDRR on Constituency- Oriented Research and Dissemination (CORD). CORD reflects PAR principles. The terminology was changed in the statement to avoid confusion with another agency using the same acronym. The 1993 policy statement has not been officially adopted, but NIDRR has continued to explore the appropriate application of PAR with its grantees and advisors.
-From the draft of the NIDRR Report on "Forging Collaborative Partnerships in the Study of Disability: An NIDRR Conference on PAR"
Corbet, B. (1995). Consumer Involvement in Research: Inclusion and Impact. In S. Stover (Eds.) Clinical Outcomes from the Model Spinal Cord Injury Systems.
Fenton, J., Batavia, A. & Roody, D.S. (1993). Proposed policy statement for NIDRR on constituency-oriented research and dissemination Washington, DC: National Institute on Disability and Rehabilitation Research.
Institute on Rehabilitation Issues (IRI). (1992). Consumer involvement in rehabilitation research and practice. D. Childers & B. D. Rice (Eds.). Little Rock: University of Arkansas at Fayetteville, Arkansas Rehabilitation Research and Training Center.Turnbull, H. R. & Turnbull, A.P. (1991). Participatory action research and public policy. The University of Kansas, Beach Center on Families and Disability.